Harmonizing Beliefs With Realities: Social Support Among Older Puerto Ricans With Disabilities

Abstract

Older Puerto Ricans of the diaspora live with evident health and socioeconomic disparities, heightening their need for support. They also provide a unique transnational case in which to explore the exchange of support. This study aims to understand the informal social support experiences of older Puerto Ricans with disabilities. Data are based on the translated transcripts of 25 interviews with Spanish-speaking, Island-born Puerto Ricans living in Boston. We identify four themes through thematic analysis: (a) making sense of responsibility within valued familial relationships, (b) conceptualizing friends as family, (c) finding resolve and meaning despite isolation, and (d) (not) asking for help. These themes delineate an incongruence between their beliefs and their lived experiences of social support, as well as how this contradiction is sometimes harmonized. Whereas some older Puerto Ricans with disabilities have support to rely on, others are isolated and lack support to address the challenges of functional impairment.

Background

Puerto Ricans in the United States live with evident health disparities and physical limitations that can heighten the need for support. For example, they experience a higher prevalence of severe chronic conditions such as obesity, diabetes, depression, cardiovascular disease, stroke, and arthritis than other Latina/o subgroups (Castaneda-Sceppa et al., 2010; Tucker et al., 2010). These conditions are related to high rates of disability and limitations in conducting daily activities (Castaneda-Sceppa et al., 2010). Social support—be it formal or informal—can buffer some of the effects of disability limitations (Chan, Anstey, Windsor, & Luszcz, 2011; Cohen & Wills, 1985). Given the value of social support in the face of functional impairment, this article examines the perception and beliefs regarding informal support exchanges among a group of Puerto Ricans with disabilities living in the Greater Boston area. These exchanges entail both the provision and receipt of informal support.

This article addresses a lack of recent qualitative research on the social support experiences of older Puerto Ricans, specifically those with disabilities (Aranda, 2007; Mattei, 1983; Sanchez-Ayendez, 1988). A novel aspect of this article is that Puerto Ricans’ perceptions of social support are contextualized within their transnational experiences. The transnational identity of Puerto Ricans on the U.S. mainland is partly based on the idea that, despite their U.S. citizenship, Puerto Ricans can be considered migrants because of the linguistic, cultural, and geographic differences between the U.S. mainland and Puerto Rico (Acosta-Belén & Santiago, 2006; Aranda, 2007; Duany, 2002b, 2011). Moreover, even though the Island does not constitute a separate country, Puerto Ricans maintain a resilient Puerto Rican national identity ¹ (culturally speaking). In other words, they maintain a clear collective identity while living on the U.S. mainland, differentiating their U.S. citizenship from their national identity (Duany, 2002b). Puerto Ricans’ transnationalism is also facilitated through bidirectional migration between the island and the U.S. mainland, which helps maintain social connections to both places. Nevertheless, many Puerto Ricans on the mainland feel an affiliation with the United States, in addition to Puerto Rico. Therefore, when living on the U.S. mainland, their traditional cultural beliefs intermingle with influences of the American host culture (Acosta-Belén & Santiago, 2006; Aranda, 2007; Duany, 2002b, 2011). In our previous research (Todorova, Guzzardo, Adams, & Falcón, 2015), we discuss how elements of this transnational identity may help explain their meaning of health and aging. For the purpose of the present study, in our discussion of the findings, we consider how a transnational identity may partly inform their social relationships and the exchange of social support.

The sample in this study includes Puerto Ricans who were born on the island, moved to the U.S. mainland from Puerto Rico early in their life and have lived on the mainland for at least three decades. Most have plans to continue aging here, while others talk about the possibility of returning to the island. Given that Puerto Ricans are U.S. citizens, there is no legal barrier for migration to the U.S. mainland. They may maintain close ties to their social network in Puerto Rico (Duany, 2011), which can include immediate family members, extended family members, and friendships, while developing and acquiring a network in their current place of residence. Thus, migration plays an important, although not exclusive, role in how they experience social support on the mainland.

In the present study, there is also a consideration of cultural beliefs and values ² identified in previous studies among Puerto Ricans, in regard to social support experiences, including marianismo and familismo, which are discussed below. Understanding Puerto Ricans perception and beliefs surrounding social support, as well as contextualizing their perception and beliefs as transnational individuals, can inform future research and how better to address elder Puerto Ricans’ needs through culturally relevant interventions.

Disability, Social Support, and Well-Being

An individual’s level of disability is commonly measured by her or his ability to perform activities of daily living (ADLs; Spector & Fleishman, 1998). ADLs mainly comprise self-care behaviors, such as eating, bathing, dressing, toileting, walking, and transferring from a bed to a chair (Katz, Ford, Moskowitz, Jackson, & Jaffe, 1963). Poor daily functioning or increased functional dependence is strongly associated with increased depressive symptoms (Anstey, von, Sanden, Sargent-Cox, & Luszcz, 2007; Barry, Soulos, Murphy, Kasl, & Gill, 2013) and social support is an influential mediating variable in the relationship between disability and psychological well-being (Taylor & Lynch, 2004). Furthermore, there is an abundance of research that empirically establishes a relationship between the availability of a cohesive supportive network and health outcomes (Kafetsios & Sideridis, 2006; Lakey & Orehek, 2011; O’Donovan & Hughes, 2008). Studies focusing on the relationship of social support and health among the Latina/o population in general (Angel, Angel, & Henderson, 1997; Mulvaney-Day, Alegria, & Sribney, 2007), as well as Puerto Ricans specifically (Falcón, Todorova, & Tucker, 2009), have shown a positive relationship between support from family and friends and psychological well-being, even after controlling for confounding sociodemographic factors such as income and education. The findings of past studies, on the relationship of social support and health outcomes, provide a basis for the present study and the need to further examine social support experiences qualitatively. However, the research presented here does not attempt to make inferences on how social support directly affects health.

Previous Research on Social Support Among Latinas/os ³

When studying support among Latinas/os many studies focus on family support, particularly from the perspective of family caregivers (Borrayo, Goldwaser, Vacha-Haase, & Hepburn, 2007; Cox & Monk, 1996; Flores, Hinton, Barker, Franz, & Velasquez, 2009; Lucke, Martinez, Mendez, & Arévalo-Flechas, 2013; Ramos, 2004). Research from the perspective of older adults demonstrates that a greater reliance on family is observed more often among Latinas/os than other ethnic groups in the United States (Almeida, Molnar, Kawachi, & Subramanian, 2009; Weiss, Gonzalez, Kabeto, & Langa, 2005). Almeida and colleagues conclude that the higher reliance on familial social support found among Latina/o immigrants is related to being foreign-born and retaining cultural values. In addition, Latinas/os in the United States may rely on family for support more than nonkin (Delgadillo, Sörensen, & Coster, 2004). In fact, in a nationally representative sample comparing Latinas/os, Asians, and Whites, Latinas/os reported the lowest level of support from friends (Chang, Chen, & Alegría, 2014). Perceived social support within nonfamilial relationships (including neighbors and friends) can influence health-related factors and subjective well-being among elders of various ethnic and racial backgrounds (Baxter et al., 1998; Nguyen, Chatters, Taylor, & Mouzon, 2016). Furthermore, in a qualitative study, Guzzardo and Sheehan (2013) found that among Puerto Rican elders in Hartford, Connecticut, who live in senior housing geared toward Latinas/os, and who lacked family support, neighbors were an important component of their network. These individuals were also connected to community-based services, possibly facilitated through their friendships and neighbors (serving as pathways to service use). Nevertheless, in another study that only included Latinas/os, family support is more important for health when compared with support from nonkin, showing a statistically significant protective effect over risk of depressive symptoms (Almeida, Subramanian, Kawachi, & Molnar, 2011).

For current and future generations of Latina/o elders, however, family support may be less available because of the diminishing size of families, economic disadvantage, geographic mobility, acculturation (Kao & Travis, 2005), the decrease in intergenerational co-residence among Latinas/os (De Vos & Arias, 2003), or increasing reluctance from elders to overburden their family (Rosenthal Gelman, 2002). These changing dynamics regarding family support, combined with social support needs related to a higher incidence of health problems, underscore the need to focus on older Puerto Ricans’ experiences concerning social support and how these are perceived in light of the unique status of Puerto Ricans.

Puerto Ricans and Social Support

As mentioned previously, a novel aspect of this study has to do with contextualizing the social support experiences within the transnational lives of Puerto Ricans. There are studies on the migratory tendencies of Puerto Ricans and the macro- and/or micro-level factors that influence their movement (Acevedo, 2004; Duany, 2002a, 2002b, 2011), as well as studies focusing on how their transnational lives influence their incorporation on the mainland (Aranda, 2007); however, none of these focus on a qualitative study of their social support exchanges. Furthermore, past research on social support or social networks and Puerto Ricans include the influence of migration on health care service use (Landale & Oropesa, 2001), the relationships between neighborhood density on physical health (Roy, Hughes, & Yoshikawa, 2013), the moderating role of migration in the relationship between neighborhood density and depressive symptoms (Arévalo, Tucker, & Falcón, 2015), and the influence of characteristics surrounding migration and its relationship to health (Alcantara, Chen, & Alegria, 2014; Angel & Angel, 1992; Arevalo, Tucker, & Falcon, 2014). However, what is more difficult to find are studies that consider the transnational context on the perceived experiences of social support among elder Puerto Ricans living with disabilities.

Earlier qualitative research on older Puerto Ricans’ perception of social support is limited to those of elderly women and focuses on cultural beliefs surrounding familial relationships (Mattei, 1983; Sanchez-Ayendez, 1988). The most relevant example to the present study is an ethnography exploring cultural meanings and patterns of social interaction and exchange of support among Puerto Rican elderly women in Boston (Sanchez-Ayendez, 1988). The author describes various cultural concepts manifested in the experiences of the individuals in her study, including marianismo, which entails the idea that women should fulfill traditional roles by providing support as a daughter, mother, and/or spouse (Applewhite, Briggs, & Herrera, 2009), while men fulfill the role of “provider” and “protector.” Sanchez-Ayendez (1988) also discusses familismo, which emphasizes family over the individual, the centrality, and importance of family, as well as the idea that there should be strong reciprocity between generations (Applewhite et al., 2009; Sanchez-Ayendez, 1988). Recent research on mainland Puerto Rican children as caregivers of their elderly parents suggests that cultural norms that emphasize the reciprocity and interdependence related to familismo and marianismo are still apparent and identified as important concepts in understanding social support among Puerto Ricans (Applewhite et al., 2009; García-Preto, 2005; Ramos, 2004). Even though familismo and marianismo are well documented among Latinas/os in general (Applewhite et al., 2009; Chavez-Korell, Benson-Flórez, Delgado Rendón, & Farías, 2014; Katiria Perez & Cruess, 2014), it is particularly important that scholars acknowledge the within-group and between-group variation in cultural factors relevant to health and psychological functioning (Betancourt, Flynn, Riggs, & Garberoglio, 2009). Therefore, this study focuses on Puerto Rican older adults specifically, given the need to investigate social support and related cultural concepts within each Latina/o subgroup, so that differences between subgroups are not concealed or confounded with other variables.

Contribution of the Current Study

The purpose of this article is to describe the social support experiences and perceptions of some older Puerto Ricans, of low socioeconomic status, and who live with physical disabilities. Qualitative research on the experience of social support exchanges can provide an in-depth understanding of the nuances and context of social support in people’s lives, which is particularly valuable for older individuals with greater need for support as a consequence of functional disabilities. In the sections above, there is a discussion regarding the lack of research in general that presents the perspective of older Puerto Ricans (as compared with that of adult children or caregivers). In addition, it is essential to study the social support experiences of this unique group (e.g., older age, relatively low socioeconomic status, disability, ethnic minority status, transnational circumstances). In other words, they are in a particular need of social support given their specific situation. While there is a vast body of literature on social support, much of it includes quantitative research that focuses on the connections between social support and health. Among the qualitative research that currently exists, few studies focus on the perspective of Puerto Rican elderly on their experience of giving and receiving support, and we have not found another study that includes a consideration of level of disability and transnational context. While there are studies and analyses regarding Puerto Ricans migration and incorporation in the United States, these articles do not necessarily tie the transnational lives of Puerto Ricans to their experiences of social support, as we do with a qualitative study. This type of research helps get at the distinctions in perception and behavior regarding social support, provide a deeper insight and consideration of subjective motives, attitudes, and needs.

Method

Study Design and Sample

Data for this study are drawn from the Boston Puerto Rican Health Study (BPRHS), ⁴ a National Institutes of Health–funded longitudinal cohort study that aims to explore the high incidence of health problems experienced by Puerto Ricans on the U.S. mainland (Tucker et al., 2010). The BPRHS has a total sample of 1,500 participants, and the inclusion criteria were as follows: (a) identifying as Puerto Rican, (b) residing in the greater Boston area, and (c) being of age 45 to 75 at time of entry into the study. The current study is based on interviews with a randomly selected subsample of 50 participants from the baseline sample of the longitudinal cohort study. The Institutional Review Boards of Northeastern University reviewed and approved the study. Each person in the sample participated in one interview, which lasted between 1 and 4 hr. Some of the topics addressed included reasons for migration, the experience of aging in the United States, illness and well-being, social support, caregiving, acculturation, discrimination, and comparisons between PR and the Boston area. There was equal devotion to topics in the interview, which followed a semistructured approach, allowing the participant to elaborate on any subject when necessary. The interviewers were trained PhD students of Latina/o origin who conducted the interviews in Spanish at the participants’ homes. The interviews were digitally recorded and subsequently transcribed verbatim. From the 50 interviews, 30 were selected for translation from Spanish to English, with the aim of achieving heterogeneity in a number of indicators, including gender, age, educational attainment, and depressive symptomology. We first randomly selected several men and women aiming for an equal number, who had diverse educational levels, then we checked their level of depressive symptoms from the survey results and adjusted to have a sample within representation from the three categories of depressive symptoms (Center for Epidemiological Studies Depression Scale [CES-D] < 15, 16-22, above 22).

This article uses data from the transcribed interviews with those individuals who indicated that they experienced problems with ADLs based on the BPRHS questionnaire data. Of the 30 translated interview participants, 25 individuals experience some level of difficulty with ADLs. For purposes of this study, we include individuals who indicated experiencing any level of difficulty. ⁵ Of the 25 individuals in the sample, there are 17 who experience one to five functional problems, who we label as “some impairment,” and eight experience six or more functional problems, who we label as “considerable impairment.” While we do note throughout the results which level of impairment each individual experienced, the analysis was conducted across all 25 participants rather than conducting different analyses for the two groups.

At the time of the interviews, the ages of the participants ranged from 49 to 75 years old (M = 59). They had lived on the U.S. mainland for an average of 37 years, and in Massachusetts for an average of 28 years. Eighteen are female, and at the time of the interview, seven were married or living as married, while 10 were divorced, four were never married, three were widowed, and one had a spouse who was not in the household. Most of the sample, 18 had a ninth-grade education or less (including eight with less than a fifth-grade education). Five completed ninth through 12th or had their general educational development (GED) and two had some college education or a bachelor’s degree.

Analysis

All the authors collaborated in the analytical process. We analyzed the transcript of each interview based on thematic analysis using a contextualist approach (Braun & Clarke, 2006). Thematic analysis is used to identify and analyze patterns of meaning in the data regarding individuals’ lived experiences of social support, while the contextualist approach suggests that the broader social context influences meanings. For the present analysis, social support is defined as “an interpersonal transaction” (Antonucci, 2001, p. 429), entailing both giving and receiving support. Throughout this article, we call these transactions “social support exchanges.” Antonucci and colleagues explain that “social support is highly contextualized and depends on roles, expectations and norms that may vary by culture, gender, age and time” (Antonucci, Birditt, Sherman, & Trinh, 2011, p. 1091). Scholars also claim that a consideration of “context” requires qualitative methods to improve our understanding of the meaning and experiences of social support among diverse groups of people (Williams, Barclay, & Schmied, 2004).

The software program ATLAS.ti was used to aid in the analysis. First, data were coded based on any relevant topic to social support. Second, these segments of coded data were collated into descriptive categories. Third, the data were then organized into interpretive themes related to the lived experiences of receiving and/or providing social support. Fourth, data were systematically reviewed after the themes were defined to refine the themes. The themes we identify in our findings combine semantic content as well as more interpretative or latent ideas. Furthermore, while we considered the data taking into account some knowledge of preexisting theories, empirical definitions, and previous findings, we remained open to new concepts encountered in the analysis. Therefore, the themes in this study are based on “a dual deductive-inductive and latent-manifest” analytical process (Joffe, 2011). Consensus regarding codes and themes was achieved through an iterative process of conceptualizing a theme, and subsequently returning to data to check the validity of the theme. The authors reviewed the transcripts individually, one at a time, and then met periodically to review and discuss major codes and themes that stood out in each transcript. After meeting about one transcript at a time, we each combined our findings across transcripts and then met to arrive at a consensus about what themes stood out across interviews. The researchers have different cultural backgrounds, including Puerto Rican, and all have extensive experience with qualitative research and cross-cultural studies. We continued to analyze the interviews and develop themes until we reached a point of data saturation.

Findings

The adults in this study frequently had expectations and beliefs regarding social support that were informed by cultural and generational norms and ideals. The way social support is experienced by these Puerto Rican adults is related to experiences of disability, changing family dynamics, and geographic and cultural distance from the island. Our themes highlight how the traditional beliefs as constructed at the time of the interviews do not correspond with their perceived reality. While we did not start out looking for these incongruences, a contradiction between beliefs and actual experiences became evident through our interpretation of the data, and are explored below in the following four themes: (a) making sense of responsibility within valued familial relationships, (b) conceptualizing friends as family, (c) finding resolve and meaning despite isolation, and (d) (not) asking for help. The first theme considers the cultural ideals about the importance of support exchanges within families, as well as the sense of responsibility inherent in these relationships. Experiences that are incongruent with these ideals include situations in which participants cannot provide support because of their disability, situations in which there is a disruption of exchange within the family, and difficult or problematic familial relationships that entail personal sacrifice. The second theme discusses how participants characterize their friends, who are valuable social connections when family are not available, in a manner that contradicts principles about relying primarily on family. These friendships have their limitations, however, and cannot provide the same level of support that one expects from family. Finally, the third and fourth themes encompass experiences in which individuals lack support. In the third theme on isolation, a lack of support, as well as expectations that support may continue to be unavailable as one ages, creates a dissonance with strong ideals of family caregiving for older members. The final theme discusses participants’ perspectives on whether or not one can ask for help from others when support is not available, contradicting collectivist ideals and the belief that loved ones can always be relied on. All themes include examples of incongruence between traditional or cultural values surrounding familial support that contradict some of their actual experiences. Within the discussion of each theme, there are examples of how participants reconcile or harmonize this incongruence.

Making Sense of Responsibility Within Valued Familial Relationships

The exchange of support within family relationships is highly valued, particularly as one ages and experiences more needs related to functional disabilities. According to Dolores, a 60-year old woman with some impairment, family is “the center” and that “we support each other but that’s what family is for.” Moreover, Juan, a 61-year-old man who experiences some impairment, explains that having family to rely on can be comforting, particularly when one sometimes feels isolated in the United States:

[The] most important thing in life is the family . . . in [difficult] moments one can . . . find comfort, talk about ones problems and how to try to resolve them, so that one can . . . live here [in the United States].

This value placed on family relationships is related to a sense of responsibility toward family members. For many, simply knowing someone is “worried” about you can be a significant sign that one is being remembered and supported. For example, in her definition of what support means, Blanca, who is 49 years old and experiences some impairment, explains that it “means many things for me. It’s like I feel supported by someone if someone worries about me.” Moreover, many participants place value on telephone calls from family members (on island and/or mainland) asking about their health. Responsibility is framed as unquestionable or self-evident, and surfaces most frequently in situations relating to one’s health.

Some participants who were unable to reciprocate in their informal relationships considered their situation as futile, leading them to feel frustrated about not being able to participate fully in their relationships. Lourdes, who is 61 years old, is not able to provide help and discusses being dependent on others to take her places, or feeling stuck because she does not know how to get around using public transit: “I’m here like a . . . it angers me to be here like this, useless [helpless] person . . . sometimes I feel so useless [helpless] . . .” Similarly, Blanca, 49 years old and experiencing some impairment, explains that she would like to be in good health to help her grandchildren so that they would not have to be sent to day care. Consequently, the sense that physical limitations leave them with unfulfilled familial responsibilities is a key contributor to a sense of incongruence with their beliefs around expectations of family support.

In the discourse on exchanges of support within the family, elements of marianismo are easily identified among female participants. Women in the sample provide support by fulfilling traditional gender roles, which can lead to personal sacrifice and be particularly difficult given their functional limitations. Elements of marianismo are also present in situations where there is a provision of support to a parent who was abusive in the past, or to children who do not reciprocate. For example, Andrea, who is 53 years and considerably impaired, perceives her maternal role as never-ending even when her relationship with her daughter is problematic: “She feels that way about me, like I am her enemy, but I help her because she is my daughter . . . I am responsible to my children until God takes me from this world.”

The sense of responsibility and purpose in providing support to others is present among the men as well. However, there are important differences when compared with how women discuss the exchange of support. In the first place, male participants discuss the importance of others needing them and their advice because they are men, particularly in regard to their adult children. For example, César, who is 52 years and experiencing some impairment, is proud that his children still need him, and explains, “I’m the boss . . . On the issues of the home, it is what I say.” In the second place, the discourse by men does not include the extent of support provided to others that is described by women, which sometimes leads to personal sacrifice. For the men in the sample, the discourse on support tends to be framed by how they are supported by their female spouses or partners (Francisco, a 72-year-old man with some impairment confidently states: “I know that I get sick, she will take care of me”), or by the balanced reciprocity in the relationship (52-year-old Enrique, who experiences considerable impairment, explains that he and his wife help each other get to their doctors’ appointments: “. . . the two of us go together . . . we limp over there together.”) However, there is no one-way provision of support and self-sacrifice inherent in their discussions, as it is for many women in the sample.

Despite the value placed on patterns of reciprocity and exchange of support among family, many participants experience a disruption of the support from family, an experience that creates dissonance with beliefs surrounding family support. In the interviews, we observed this disjointedness when there was an interruption to filial piety among adult children living on the mainland, and in situations in which family members are living in Puerto Rico (PR). Regarding the interruption to filial piety, an element of familismo, is present even in situations in which children are perceived as unable to, or uninterested in, providing support. Some participants acknowledge understanding their adult children being too busy and dealing with their own challenges or responsibilities. Sofía, who can only rely on one daughter, explains that this daughter supports her despite other responsibilities:

She has three children and she works . . . and doesn’t have time. She goes out of her way to help us. It’s not easy . . . My family . . . they have their expenses . . . They pay too much rent . . . [They have] bills . . .

In another example, Andrea, 53 years old and living with considerable impairment, has problematic relationships with her adult children, and seems to feel some resentment about not getting the help that she needs with ADLs. She states, “What can one do? You have to leave it up to God . . . Hijo fuiste, padre serás y lo que hiciste, así te harán” (similar to “what comes around goes around”), referring to the fact that her children will be treated badly by their own children—similar to how they are treating her now.

Thus, there is incongruence with expectations of filial piety and familismo that contrast with the lived reality of adult children’s inability to provide support to participants. The disabilities that Andrea and others experience, combined with their beliefs regarding familial responsibility, make the apparent disruption to filial piety particularly distressing.

Aside from adult children not providing needed support to participants, many participants experience a social network that is fragmented by distance and, as such, disrupts the exchange of support. Their network is divided between those who live on the U.S. mainland (either in MA or other states), and those family members and friends who live in PR, including siblings, parents, adult children, and extended family. Some find that it is possible to exchange support through visits and telephone calls. However, others discuss sorrow or regret when not being able to provide support to family in PR, or grief over not receiving calls from family in PR and being worried about their health and well-being. With aging, experiencing a disruption in the ability to provide family support conflicts with ideals surrounding reliance on family. However, participants manage to make sense of this incongruence by finding a resilient sense of purpose through providing support. This sense of purpose is manifested when they care for a frail, ill, or impaired spouse, and when they help adult children with child care responsibilities for their grandchildren. Individuals in the sample remark that by providing valuable support they are fulfilling their duty to family members. Thus, by emphasizing what they can do for others (despite functional impairment) and their commitment to family, they reconcile the lack of support they receive or the sacrifice that some relationships may entail.

Conceptualizing Friends as Family

For many participants, friends and neighbors provide a substantial amount of daily support, either through companionship, or as sources of instrumental support, such as lending money, visiting them at the hospital, or cooking for them. Despite a discourse on the value of family support, some participants experience the reality of relying more on friends for social connections. Consequently, they harmonize their experiences surrounding the presence of support from friends, with their cultural ideals regarding family support, by redefining their friends as family. This redefinition of friends makes the reality of their supportive friendships more congruent with their beliefs that family should be providing support. Rosario, a 60-year-old woman who experiences considerable impairment, discusses how she relies on her friends and that these relationships tend to be reciprocal and satisfying:

I do have some friendships that for me it’s as if they were family, as if we were sisters. I have the comadre ⁶ Marcela that for me is like a sister . . . I have many friendships that we visit each other and that we always spend time together . . . I always have my friendships, when one gets sick [ill] one or the other comes.

Her friends provide instrumental support to her as well: “because if I need an errand they do it for me, if I need a little soup, they bring it made for me.” The physical accessibility of neighbors makes them a reliable source of support. Within these friendships, they help each other through illnesses, by providing instrumental support and companionship.

Many participants discuss the importance of having friends who are Latina/os. In fact, some even point out that they are only friends with other Latinas/os. The common interests and experiences as a minority group in the United States, and as individuals with cultural identities and preferences that distinguish them from Americans, make other Latinas/os an important source of support in a place where one feels as a foreigner or stranger. They develop camaraderie through their common experiences as a minority group in the United States. For example, Hortensia, who is 57 years old and experiences considerable impairment, has limited contact with family. She explains that she would like to participate in more activities with a Latina/o group she belongs to, and would like other Latinas/os to participate as well:

For people to participate in different kinds of activities, so that they can feel more like they are part of a family. That way they get to know each other . . . and well the love that is missing, the affection, well they can have that with one another, and they can have friendships and, they [end up] not feeling so alone.

For Dolores, neighbors and friends are also important sources of support even though she has family members present in her life. One young neighbor in particular visits every day, and Dolores explains that this woman is like a daughter to her, and that they love each other. Family members call frequently, but are not present on a daily basis, as in the case of this neighbor with whom she has a reciprocal relationship. “We (participant and husband) belong to her—She calls me, she says I am her adoptive mother.” However, when asked “if something were to happen to you, who would you trust?” she responds that she would rely on her children. This illustrates the limitations of friendships as not truly being able to take the place of family as sources of support. Even though some friends can be framed as like family, there are boundaries in those relationships that cannot be crossed.

The conflict between ideals and lived experiences within this theme is in the very reliance on friends as important sources of support when family is not available or not present. Friends combat the isolation that participants can experience resulting from an absence of family or lack of support. Beliefs that family should provide assistance in times of need and illness combined with experiences of relying on friends are harmonized through the conceptualization of friends as family. However, there are limitations to what friends can do for each other.

Finding Resolve and Meaning Despite Isolation

Some participants are embedded within networks that provide inadequate support, or are isolated with few sources of support. Often, this isolation is related to their disability, which keeps them bound inside their home. The isolation can lead to loneliness, sadness, and even fear. For example, Rafaela, a 52-year-old woman with some impairment, discusses her sense of solitude that leads to boredom and loneliness:

I almost never go out, I am always here, since I do not have much of a place to go to . . . casually. I do not have much to do here, where to go or anything like that. I do not know much to take a car or bus or go out, I don’t know how to walk much, and well obviously well I do not go anywhere.

She explains that she spends her time cleaning the home and that she has few friends. She further states, “I do not have much support, since I feel lonely.” Experiences of loneliness and solitude as one ages contradicts strong beliefs surrounding caregiving for older family members.

Some participants mention that “fear” hinders their ability and/or motivation to leave their home and explore their neighborhood and surrounding area, contributing to feelings of solitude or loneliness. For example, Dolores, who is 60 and experiences some impairment, would like to “take tours,” but she is too scared to go out on her own, to use public transportation, and she adds that this inability to be independent upsets her. Similarly, Blanca states,

Sometimes you want to do something and you can’t. Sometimes I want to go to the stores and it’s bad, it’s far away and I don’t know whether to go or not because I can’t find someone to go with.

For Blanca, as for many others, the lack of companionship deterrs her from leaving her home. Another example, Eugenia, a 56-year-old woman with considerable impairment, says that she does not like to leave her home alone because she is afraid, to the point that she avoids going to the doctor, even when she is very sick, because she considers the doctor’s office too far from her home. There are varied reasons that people give for being “fearful.” For some, their inability to speak English (and that one feels more confident in Puerto Rico because one can speak in Spanish) impedes their motivation to leave their home, whereas one would feel more confident in Puerto Rico because one can speak Spanish. In addition, living in an impoverished neighborhood where there can be drug use and crime can be a strong deterrant to venturing outside and a reason to be fearful of leaving one’s apartment.

Another major reason that participants are isolated and fearful of leaving their homes is because of the risk involved due to their disability. Worries about a greater level of dependence, on others, with aging an increased disability can be a source of fear or distress. For example, Hortensia, 57 years old and experiencing considerable impairment, mentions a “fear” of aging related to not having a family support system in place: “My family has already forgotten me, imagine when I am older, and family does not care [about] you.” Thus, the cultural ideals that family is present as one ages and experiences increased functional dependency directly conflict with these participants’ lived experience of isolation.

However, participants in these situations also discuss moving forward, or making do, given their situations, as a way of maintaining their resolve to complete daily tasks, despite their functional impairment. For example, Juan, 61 years old with some impairment, states, “You can feel isolated (in the mainland). But, you have to make an effort, get along and compete (with others) . . . in whatever you can.” Similarly, 72-year-old Viviana, who experiences some impairment, explains:

If I do anything strenuous, I get tired, sometimes I get dizzy spells . . . I go out sometimes by myself . . . a little beat up [disheveled] . . . and so I don’t like going out by myself anymore because I get dizzy . . . I’m afraid that something is going to happen to me . . . But I still go out alone . . . and I do the things I have to do here by myself.

In addition, Rosario, a 60-year-old woman with considerable impairment, says that she is temporarily not getting a cleaning service that she usually receives. However, she manages to fulfill tasks, even though they cause her great difficulty and affect her health.

Some participants find that religion or a religious community can help them manage or combat isolation and loneliness, either by inspiring hope or meaning in life, or by directly providing an outlet for social interaction. For example, Beatriz, 61 years old with considerable impairment, discusses the positive influence of religion, given her depressive tendencies and suicidal thoughts: “When you think of the Scriptures you think that God does not want you to kill yourself, that God wants you to live . . . and that keeps you strong and sustains your mind.”

According to Beatriz, her relationship with God is just as important as family because it has helped her overcome her depressive symptoms. Hortensia, 57 years old and with considerable impairment, refers to church and religion as opportunities to connect with others:

Inside the community, you learn a lot and grow, and in addition you visit a lot of people, you can do works of charity, and sometimes they will [visit you also] . . . yes, and it’s very important for me.

Isolation is managed through ideas of moving forward and performing daily tasks despite their disabilities (as discussed above) as well as through the meaning that religion provides.

(Not) Asking for Help

Despite cultural beliefs surrounding the importance given to family support, individuals in the sample sometimes lack adequate support and describe situations in which asking for support is difficult. Many believe that asking for support from friends is generally not considered appropriate, especially for basic necessities like money, food, or housing, which illustrates the limits of “redefining friends as family.” However, they do not consider that there is a problem with asking for help from family, if the need arises and familial support is available. They differentiate between friends and family in their discourse on asking for help. The conclusion that they draw regarding this dichotomy is that it is more suitable to request aid from family rather than friends, creating a correspondence with cultural notions of familismo.

When it comes to asking for help from individuals in their informal network who are not family, several participants mention that there is no problem when others who need help ask for it, but it is not acceptable when thinking about support for oneself. Carmen, 75 years old with considerable impairment, says that when it comes to her neighbors, she helps them, but in her own case, she does not ask for help. In discussing the receipt of free turkeys for Thanksgiving in the building where she lives, she states, “. . . God forbid, I ask for one for myself. Although asking for something is not a crime but it would be the last thing I would do . . . the last.” She mentions that it is all right to help others when they are in need, although people should not complain and feel sorry for themselves. Many participants’ problematic or negative feelings about asking for support for themselves are related to perception and how they would like to be seen by others. For example, 52-year-old César, who experiences some impairment, does not ask for help because it would be perceived as complaining. It is important to accept one’s situation and make the best of it. He feels that he could count on his sister, daughter, and girlfriend for anything he needs, but later states “if there’s no butter, we’ll eat bread without butter . . . I’ll dance to whatever rhythm.” César manages his situation by minimizing the impact of poverty.

Aside from ingratitude, shame and embarrassment are also linked to negative feelings about asking for help. For example, Lourdes, 61 with considerable impairment, explains,

If I need someone to help me I’m not going to ask for clothes or things like that . . . nor food . . . I’m not going to shame myself . . . Yes that would make me feel ashamed. I wouldn’t dare to. Now with my sisters I would . . . they’re the only ones who offer . . . with my sisters . . . or with my brothers I might ask for something I need or ask to borrow [some money].

Hortensia, 57 years old and with considerable impairment, discusses asking for help, and explains that expressing a need for help can lead to embarrassment and signal ungratefulness for what one has. She explains,

Up till now, at this time I can’t say that I need help for other things. It would be ungrateful on my part to say that. We all need support in one thing or another. Always humans need others . . .

Thus, Hortensia paradoxically states that asking for help may seem that she is ungrateful for what she has, but then acknowledges that it is natural to need help from others. Therefore, a way of managing feelings of discomfort with asking for help, is acknowledging that one does have something to be thankful for. Hortensia, similar to César (mentioned earlier), utilizes positive attitudes to harmonize an incongruence between values or beliefs and experience.

Discussion

The findings of this study contribute to our understanding of social support experiences among a specific group of older Puerto Ricans with disabilities living on the mainland. Themes highlight the meaning of support within informal relationships for older Puerto Ricans with disabilities, such as the value placed on these relationships and the sense of unquestionable responsibility that goes along with exchanges of support. This relates to our previous findings on aging as a socially connected process for mainland Puerto Ricans (Todorova et al., 2015), underscoring the importance of social support and relationships for this population. Themes also elucidate social support experiences that correspond with cultural ideals surrounding family support as well as experiences that are incongruent to those ideals. The incongruences in the first theme contrasts the value placed on support from family with being unable to provide support because of a disability or when experiencing a fragmented network split between the United States and Puerto Rico. In the second theme, the reliance on friends contrasts with ideals on the availability and reliability of family. In the third theme, a dissonance exists between beliefs regarding family responsibility and filial piety with experiences of isolation. In the fourth theme, values of family support and collectivist cultural ideals are incongruent with situations that entail deciding whether or not to ask for help from others and worry about overburdening family members. Much of these incongruences in social support can be made sense of within the general context of migration, and more specifically through an understanding of the unique situation of Puerto Ricans in the U.S. mainland. While it is the same country, cultural norms, and traditions are different. As a result of migration and changes in physical place, these adults experience a dissonance between their cultural expectations and lived experiences of support and filial piety. Furthermore, there are intergenerational shifts in meanings of social support over time. These incongruences are more problematic for these individuals due to physical limitations, dependency on others, and their corresponding decreased in the ability to provide certain types of support to others.

Our findings provide information that can contribute to our understanding of social support among older Puerto Ricans in the United States, by elucidating how the incongruences between values and their lived realities are dealt with in various ways. For example, participants find purpose when providing support even when it entails personal sacrifice or within problematic relationships. In addition, friends are redefined as family to emphasize their emotional closeness and to allow these interactions to fit within their framework of familial relationships. Experiences of isolation are reconciled through finding ways to manage getting daily tasks done, and finding a sense of meaning through religious beliefs. Finally, when it comes to asking for help from others, some participants maintain a positive (“making the best” of a situation) and, therefore, grateful attitude as a way of harmonizing their beliefs and their contrasting experiences.

The findings also provide current evidence of familismo and marianismo (Applewhite et al., 2009; García-Preto, 2005; Ramos, 2004; Sanchez-Ayendez, 1988) among older Puerto Ricans living in Boston, despite many years of residence in the mainland (averaging 37 years). Cultural notions of familismo may add meaning to the exchange of support, thereby contributing to well-being despite negative interaction or conflict in relationships. Thus, cultural norms may help Puerto Ricans deal with and confront negative interaction in their relationships and at the same time make sense of it. However, these cultural notions may also be facilitating abuse or situations that negatively affect their psychological well-being. For example, marianismo may lead to stress for family caregivers, given that in their role as primary caregiver, women must place family needs above one’s own needs (García-Preto, 2005; Ramos, 2004). Ramos (2004) also suggests that support exchanges within the family can be stressful for Puerto Ricans when the practice of traditional norms is hindered not only by socioeconomic difficulties but also by social trends, such as higher rates of divorce, smaller families, and geographic mobility. While the focus of our study is on individuals with disabilities who may need support, many of these same individuals also act as caregivers for others, which has clear relevance for their sense of self-worth.

Policy makers should not only recognize the importance of family within Puerto Rican culture but also be aware that, with aging and as a by-product of migration, that they are also facing the reality of the absence of family. Many Puerto Ricans living on the mainland attempt to preserve relationships on the island, particularly with family members (Duany, 2002b). Changing circumstances and social trends experienced by Puerto Ricans on the mainland suggest that they are not a group that is deeply embedded within a familial social network (e.g., adult children are busy with their own children and work obligations, and many family members live far away from each other). Given past research on the reliance on family among Latinas/os and Puerto Ricans (Almeida et al., 2011; Weiss et al., 2005), service professionals may assume that Puerto Ricans, much like other Latina/o groups, can rely on family members for support as they age. This study demonstrates that while some Puerto Ricans with disabilities can rely on family and friends for support, others may be living in isolation and lack adequate emotional and instrumental support to address the challenges related to functional impairment. Therefore, services and programs for older Puerto Ricans should address this incongruence between values and actual experiences.

Issues of poverty are pervasive throughout the discussions of social support in our findings. Some individuals discuss the difficulty of maintaining relationships with individuals in PR when one is unable to travel due to the cost of the airfare. Others discuss the quality of the community neighborhood where they live, and the way it contributes to their feelings of fear when there is a lack of companionship. Therefore, it is possible that the idea of asking others for help with daily activities does not seem as concerning as having enough money to buy food. In their outreach strategies, services for older Puerto Ricans must take into consideration the problems with asking for support and the need for more urgent resources.

Even though Puerto Ricans in our study find ways of reconciling insufficient support with their beliefs and values, the situations of isolated and fearful older Puerto Ricans with disabilities can be addressed through more formal types of support. Recent research suggests “convoys of care,” a combination of formal and informal support can improve the quality of life of older adults who experience increasing functional decline (Kemp, Ball, & Perkins, 2013). These formal interventions or services should engage in cultural humility and seek to understand within-group variation, or differences at the individual level (Duntley-Matos et al., 2017; Hook et al., 2016). For example, formal service professionals should not underestimate the social support needs of Puerto Ricans, given presumptions about the availability of family caregivers that may characterize them as a group (Almeida et al., 2011; Weiss et al., 2005). In addition, there may be an expectation that because of their citizenship Puerto Ricans are not as much in need of outreach strategies to improve their knowledge and access to the community-based formal service system that can complement an existing informal network, or fill in the gap of an unavailable or rapidly shifting informal network.